Living with Dementia

Personal experiences of living with dementia

James McKillop describes his experience of the impact living with dementia has had in relation to driving in the UK

In the UK, once you have passed your driving test, the law assumes you are able to drive unless you are disqualified for some traffic offences, or are judged no longer able to drive safely, due to certain illnesses, dementia being one. Note: Motorbikes/scooters are included as you are a road user and could still be involved in an accident, or cause an accident, resulting in someone’s injury or death.

In my case I did have driving problems, among other difficulties, such as attempting to drive down the wrong side of a dual carriageway several times. I was positioned to turn right, indicating, ready to proceed, and it was only due to oncoming drivers flashing their headlights at me, that I was prevented from making that potentially fatal manoeuvre. Had they not come along at that time, I would have been off down the wrong side. I couldn’t understand where I had gone wrong.

When the average person hits problems, they devise ways to get round them. I was no different. I was also having trouble at roundabouts. When I approached and read the directions, I would forget in an instant, where I had to go. I used to circle several times, feeling more and more dizzy and still take the wrong exit in panic. I began to take the first left and, if it was not the correct road, I would do a U turn and return to the roundabout, then take the next left and repeat the process until I reached the exit I wanted. It was a laborious but safe way, of getting through roundabouts. This worked well until one day I turned left, and came to another roundabout. After that, I steered clear of strange roundabouts, and stuck to local routes.

My wife Maureen refused to sit in the car with me, if I was driving. Whereas before, she felt perfectly secure about my driving abilities, as I was a safe driver and had never been involved in an accident, she was now uneasy and concerned. She stopped me taking my young son out with me in the car, as she was frightened for him. She remarked that when say, going along a motorway, I kept weaving from one side of the lane to the other side then back again. I couldn’t seem to hold a straight line. This of course I strenuously denied. I was a perfect driver. Looking back it is clear I had a condition called anosognosia, the denial or unawareness of an impairment/disability.

I also started stalling the car, a thing I had never done since my “L” plate days. My clutch control was haywire. I blamed the clutch and had it replaced. But I still stalled the car and grumbled that the garage had done a poor job. I hit kerbs when turning corners, and I just couldn’t fathom out what on earth was going on. Having been a keen cyclist, I knew how to turn a corner and I never hit a corner when I held a provisional licence. I did report my driving problems to my doctor, who advised me, to stick to roads I knew very well.

It all became clear when I was diagnosed with dementia. In the UK, you have a duty to report a medical condition, which might affect your driving ability to the DVLA (the regulating body in the UK for drivers), otherwise you are in breach of the conditions of your licence. Write to The Driver’s Medical Group, DVLA, Swansea, SA99 1DL. (Phone- 0870 600 0301. Fax- 0845 850 0095. Web Site www.dvla.gov.uk/drivers/dmed1.htm). You should also let your insurance company know for, if you are in an accident, even though you are blameless, they could deny responsibility and you are left uninsured, facing legal and repair costs on your own. It is not worth the risk of taking a chance and keeping mum. A judge can apply to see your medical records. My psychiatrist advised me to stop driving. But after coming to terms with my illness and receiving medication, I felt capable of driving, now I knew what was wrong. I felt ever so much better and more aware of my surroundings. So I persisted with applying to continue to drive. I sat a test arranged by the DVLA and passed it. I was given a licence to drive for three years and continued to drive cars and vans. I had no further problems and felt I was driving safely in my comfort zone. I no longer undertook long journeys, as I felt it was not in my, or other road users’, interests, to get overtired. I, like many people with dementia, lose concentration when weary, or as the day goes on.

However, when the three years were up, and I was accident free, I applied to renew my licence, fully expecting (and rightly so) to sit another test. I heard nothing for six months and on a Christmas Eve, I received a letter from the DVLA saying they were withdrawing my licence. Why couldn’t they have waited another day, especially after keeping me hanging on for six months? What a Christmas spoiler! They did tell me I could appeal to the Courts (twenty one days in Scotland, six months in England), but warned me it could be costly and may be unnecessary. By this time, my wife was in charge of the finances and refused to give me money for an appeal. She was terrified I would get back on the road. I felt this was against my human rights and I should have been given another test. If I failed, then so be it, I was no longer capable of driving safely, and would have accepted it, albeit reluctantly. But I felt aggrieved that I was denied a chance to prove myself. I later found out it was my GP who had provided the report which barred me. Yet the ironic thing is that after diagnosis by a Consultant, my GP had never mentioned the word dementia to me. I only went to the doctor when something was hurting me physically. She had no idea that I had been driving safely, and was unaware of my capabilities. Remember dementia and driving, were never discussed again.

It is a bitter blow losing your licence and you have no idea just how crippling it is, until it happens to you. Your mobility is turned upside down. Your freedom to get up and go at a moment’s notice is gone. You lose your independence. You may have to rely on others to get about. You feel a nuisance if you ask and are reluctant to bother busy people. You may feel infantilised, taken about like a toddler. Some places are off bus routes and the beaten track and you can no longer travel there, unless someone has the time to take you. It can be humiliating and demoralizing. If lucky, you go in their chosen time, which may not coincide with your chosen time. For example I might want to go for a dawn photograph but the driver is only free in the evening. You are at their mercy. After all these years it still rankles to be a passenger. I still feel I can drive (apart from big roundabouts) and when I sit in a car, I still “drive”. I watch the road, looking out for potholes, cars entering the main road, scanning for pedestrians, especially children and animals. I am always saying (to other’s annoyance) there is someone in the mirror. I am a terrible front seat passenger and get tired on a journey, as I watch the road like a hawk. My feet get sore with driving. Why both feet? The imaginary clutch and brake! I can anticipate other driver’s manoeuvres and know when they are going to turn, when not indicating. I feel I can still drive, just give me a chance.

In conclusion, the medical person who comments on a person’s ability to drive, should be the person who sees and treats the person with dementia, for the dementia.

If someone is not diagnosed until well on into the illness, they may clearly be unfit to drive and may realize it themselves. All others should be allowed to sit a test.

If someone has their licence withdrawn without a test and they respond to treatment and medication, they should be allowed to sit a test, and abide by the result.

I also strongly feel that in appropriate cases there should be a restricted licence available.

For example, you could be restricted to say, daylight only, A or B roads, not motorways, your local town, X miles from your home, or so many hours a day. If you live in a rural area or on an island, where the traffic is light, and there are no confusing roundabouts and the bus service is poor or non- existent, and you are tested and pass, you should be able to be allowed that restricted licence. You should of course be able to pass further tests. But you must abide by the restrictions and not be tempted to drive say, into a large city.

Note. While some things did happen to me, I am aware now of other problems, some may experience when driving, viz:

Getting lost while driving and having to stop to work out where you are.

Forgetting where they parked the car, or going home forgetting they came by car.

Not slowing for pedestrians, who may have to jump for it.

Going the wrong way down, a one way street/ (dual carriageway/roundabout already mentioned)

Unaware of running red lights/pedestrian crossings

Trouble trying to fit within parking lines/bays.

Problems with driving in the dark, exacerbated when it is raining/snowing. Note, a sight test may show the eyes are in order, but there may be a problem between what the eyes see and what the brain processes.

Passengers squirming, sweating, dismayed, telling you to be more careful as you have just done something dangerous and were lucky to avoid a collision with someone or something. Passengers expressing disquiet at your driving etc. People refusing to sit with you, when you are driving.

Road rage at other drivers (who may be innocent, it was who caused the problem) from a normally placid person.

Muttering how bad other drivers seem to be these days.

Inside the car. Forgetting to look in the mirror, signal, dip headlights, monitor the fuel gauge and watch the speed, according to the local regulations.

Alexia. This is a problem with reading and explains why I had major trouble reading destinations at roundabouts.

Outside the car. Forgetting to check the engine oil, tyre pressures, washer bottle, weekly check on car lights and fuel gauge. Do they run out of fuel at times or put in diesel instead of petrol and vice versa?

Finally, do not expect someone to surrender their car keys without a fierce fight. If they do hand them over, feel lucky. They may be aghast at any suggestion to stop driving. It can be like a death knell. There may be bitter recriminations, making you feel guilty, about what you are doing to them. They sacrificed to bring you up! They were doting parents! They have been a lifetime, loving partner! They always put you first! How could you be so cruel and unfeeling? But remember, you have a duty of care towards them, as you would a child growing up. It is heartbreaking making the right decision. You are tearing out their heart and demoralizing them, but you will have them for longer, without the added worry of what grief/havoc they could cause in someone else’s life. Plenty of TLC comes in handy. Understand their anguish. You are surgically removing a great part of their life. It will be a knock to their self-esteem, giving them a sense of failure. Yet they did nothing wrong. There can be an overwhelming sense of loss. What have I done to deserve this!

It is better to persuade them to cease driving out of love and concern for them and others, rather than have some official body wrenching your licence from you. After seven years, I am still resentful! I would love to drive again even if it was on a race track while not in use, field, forest road or a (deserted) sand/shingle beach. You could use a beach buggy or a quad bike (helmeted of course). I have actually done this on a beach and on a supervised quad bike course. I have never tried a jet ski on snow and water and wonder if this would satisfy my yearning to control an engine again and feel the thrust at my fingertips. One thing I will try some day, is the dodgems at a fairground. But where are fairgrounds these days?

Research what is available, to get them out of the house, to carry on life as before. Family, neighbours, friends and members of clubs may be able to offer lifts. Is there any other alternative to driving?

There may be free or cheap fares on public transport. Taxis in some areas offer discounted travel to people with disabilities. It could be healthy to walk to the local shops for light shopping e.g. a newspaper.

If someone is having driving problems and have not been diagnosed with dementia, remember other illnesses can mimic dementia. Get a proper assessment as soon as possible.

Finally if someone is unfit to drive, they must get off the roads. No ifs, buts or maybes.

I know that four years ago, I realized I could not drive, as when I sat in the front passenger seat, I could no longer “read” the road or follow the signs. My sense of anticipation, so necessary these days, was gone.

Professionals who may see this article. The Dept for Transport have issued a paper “Attitudes Of Health Professionals To Giving Advice On Fitness To Drive (Report no 91 ) 2010. This contains a lot of detail for you.

James McKillop

This article has been updated since it first appeared in the Dementia in Europe magazine, issue 6 (September 2010)